A loss of independence is a fear many seniors have. When this fear is realized, there are several ways caregivers need to help. According to an AARP study conducted in 2012, 57% of seniors over age 70 do not find it easy to live alone and need help with daily tasks. This loss of independence can have a toll on senior’s psychological and physical well-being. Most people begin to live and perform daily life tasks independently by the age of 20. About 50 years later, many find that independence is no longer safe or viable. The loss of independence seniors face can often result if grieving, frustration, and other emotional upset. Caregivers can help seniors by understanding the process.
Types of Independence Seniors May Lose
As seniors’ bodies and/or minds degenerate, they can experience a variety of types of losses. Their independence can be impacted in ways that change their lifestyles and even their understanding of the world. Some types of independence seniors may lose include: • Mobility • Ability to live alone • Memory • Comprehension/decision-making skills • Strength to perform daily tasks • Energy to clean or cook • Social life • Sight • Hearing
How to Help Seniors Cope with Increased Dependency
Relying on other people’s assistance for basic tasks like bathing or common activities like driving can be frightening and frustrating for seniors. With the loss of independence, seniors also tend to lose some control over their schedule, freedom, preferences, and more. Caregivers can help make decreased independence more bearable using strategies like these:
Maintain a Standard of Dignity
Requiring assistance with activities like bathing or shopping does not mean that seniors need to give up their dignity. Caregivers should always guard seniors’ privacy. It is also wise to use the terms a senior does when referencing body parts, activities, or even hygiene products.
Ask Instead of Telling
Caregiving for someone who has lost a type of independence is a supportive role, not a leading role. Caregivers should ask seniors about their preferences, needs, etc., instead of telling them. For example, if a senior cannot cook for themselves, a caregiver should ask for input for meal planning. Give Options for Caregiving Since dependence requires trust and can be very personal in nature, it is important for seniors to have choices. Learn if a senior prefers same-sex caregivers, certain routines, etc.
Stay Organized and Consistent
Dependence means a loss of control. Seniors have to wait on others for assistance, which can be stressful. Caregivers should remain consistent in their routine so that seniors don’t need to be anxious about when or how their care will be provided. Organize necessary materials so they are accessible to seniors who cannot mobilize independently as well.
Offer Reminders That You Can Be Counted On
Depending on other people for help, especially with essential tasks, requires trust. This can cause seniors anxiety and stress. Remind a nervous senior that he or she is in good hands and is being taken care of to assuage their fears.
Ask Instead of Telling
Caregiving for someone who has lost a type of independence is a supportive role, not a leading role. Caregivers should ask seniors about their preferences, needs, etc., instead of telling them. For example, if a senior cannot cook for themselves, a caregiver should ask for input for meal planning.
[T]he perfect coffin for a gerbil is a Celestial Seasonings tea box. With the tea bags removed, the white wax-paper bag inside is the ideal size funeral shroud for a tiny body. This unfortunate factoid, like much of the information about how to dispose of a beloved pet’s body, comes from personal experience. I buried four gerbils in my backyard as a child, complete with incense on their graves and a few words.
As an adult with a puppy well on his way to being over 60 pounds, I hadn’t given much consideration to how I’d deal with other pet deaths until a friend asked me, “this is a terrible question, but what do you do when he dies?”
I dug into the question, and as I did I found that I wasn’t alone in wondering—but that there isn’t a great answer.
The experts I talked to emphasized that our relationship to pet loss has changed over the last century. “It’s not surprising to me that we feel such grief over the loss of a pet, because in this country at least they are increasingly considered family members,” says Leslie Irvine, a sociologist at the University of Colorado-Boulder. Sixty-eight percent of Americans own a pet, an increase of twelve percent since surveys of pet ownership started in the 1988, when it was already booming. Losing a beloved animal friend is made harder by the relative novelty of the experience, often being a person’s first experience with a close death, and by it being one of the few times most people chose euthanasia to end a life. And depending on the relationship, the loss of a pet can be more traumatic than the grief we feel after the death of family and friends. In part, this is because pets share some of our most intimate relationships—we see them every day, they depend on us, we adjust our lives around their needs—and yet publically grieving their loss is not socially acceptable.
We haven’t always felt this way, though. As a society, Irvine says, we’ve moved from thinking of pets as accessories or mindless pieces of furniture to thinking, feeling beings.
Pets become family members because they actively shape how we live. “A lot of people who have pets wake up at a certain time, not because of any alarm clock or any need of their own but because their dog needs a walk,” says Irvine. “Just as other humans participate in becoming family by doing these practices—getting up together, eating together, navigating the bathroom times, and all that—so do animals become part of the rituals that make family.”
And it isn’t just a daily ritual that makes pets familial. We form attachments to animals in the same way that we form attachments to people, says Cori Bussolari, a psychologist at the University of San Francisco. She points to a study in Science from 2015 that found when people gazed into a dog’s eyes, both the person and the dog had increased levels of oxytocin. Oxytocin, sometimes called the love hormone, regulates social interactions. It’s released when humans stare into each other’s eyes, and when parents look at their newborn children. “I’m sure if you did the study with other animals it would be the same,” Bussolari says.
I already imagine losing my puppy will be harder than burying my gerbils, but I also didn’t stare into my gerbils’ eyes quite as much. No matter the species, our bonds with our pets are unlike our other relationships. For one, Bussolari says, they’re entirely dependent on us. For another, Irvine says, “we idealize animals, especially dogs. We create them as these almost angelic characters, so we have this idea of unconditional love for us.” When they die, she explains, it almost seems like a violation of this mythos we’ve built around them.
On a personal level, the death of a pet is often a person’s first exposure to the loss of a close relationship, says Thomas Wrobel, a psychologist at the University of Michigan-Flint. Human death has been relatively sanitized, he explains. We have an industry for funerals and cremations, and you don’t typically have to deal with a dead body yourself. “With pets it’s a lot more in your face,” says Wrobel. “Unless you do the cremation option, you’ve got this dead dog you have to deal with, which is a lot more intimate experience of the death.”
With pets, you also have to decide if you are going to euthanize, and when. In a study of 305 pet owners, Bussolari found that almost seventy percent chose to euthanize their pet. It’s often medically necessary—the kindest thing to do for a dying animal—but the decision can wrack the owner with guilt. In 2005, Wrobel did a study of the relationship between symptoms of grief and attachment to pets. “In our results we saw that guilt was way up there [on the list of emotional responses], because a lot of people are carrying the animal to where it would be euthanized,” says Wrobel.Years ago, my cat, who I had rescued as a kitten, developed a urinary tract infection that lingered due to a weakened immune system from his feline HIV. I’d tried everything to help him get over it. One day, I came home and saw from his tepid movement that he was clearly in incredible pain—he was dying. Driving to the vet was excruciating, and my mom had to be the one in the room when he was euthanized because I was too upset.
“After the passing of a pet ninety-nine percent of people say to me in some shape or form, this was harder for me than the loss of my mom, or my grandma,” says Dani McVety, veterinarian and CEO of Lap of Love, a veterinary hospice network. She has found that the option to have in-home euthanasia and pet hospice makes death easier for families.
In-home euthanasia helps remove the negative experience of knowing that you’re driving your pet to their death in a place that you know causes them stress. In her practice, she sees the same kind of anxiety over deciding the right time for euthanasia at the end of a pet’s life. “I’ll tell them, I know you don’t want to hear this right now, but when this is done, you will feel relief,” McVety says. “And people do this thing after it’s done. . .they stand up and put their hands on their head and say, ‘Oh my gosh, I feel so relieved.’”
But despite the fact that 68 percent of Americans own a pet, and have grown to treasure them like members of the family, taking care of a dead animal’s body isn’t the same as dealing with a human corpse. In New York City, if you look up what to do with a deceased pet on the 311 page, you come to this statement:
If you think that’s appalling, you’re not alone.
“Wow. Wow, you end up just treating it like a raccoon. Wow, that’s crazy,” says McVety. The New York Department of Sanitation doesn’t keep data on how many pets are left on the curb so it’s unclear how often this happens. Other major cities, like Houston and Los Angeles, will pick up pets curbside, and in other cities you can call for pickup.
These guidelines are written so that the city has some response available, but they don’t take the emotional element into consideration, says Bonnie Beaver, professor of veterinary medicine at Texas A&M.
City services aren’t the only ones to fail to see how emotional a pet death can be.
“You feel often isolated, socially,” says Beaver, “because people don’t understand what you’re going through, because they might say, ‘get over it, it’s just a dog’—which is exactly the wrong thing to say.”
When you lose a person, there are rituals—the funeral, the memorial—and it’s acceptable to take time off work and talk about your loss. “What people grieving the loss of a pet don’t realize the first time they lose a pet is the strength of the grief and how long it lasts,” says Wendy Packman, a psychologist at Palo Alto University. “So it surprises the griever, and it really surprises the people who aren’t sympathetic to pet loss.” Although Packman has found that the depth and length of grief is similar to how we grieve people, this social stigma causes it to feel more painful.
“With disenfranchised grief is there is less support, and the grief can be even worse than for a person because there are no rituals,” says Packman, “and when people do go out and do a ritual, when they feel brave enough, they can be ostracized.”
As I was researching this story, friends told me about the lengths they went to in order to bury their pets properly, despite regulations about where and how you may dispose of animal remains. One snuck into their community garden at midnight to bury a pet rat under a rose bush. Another drove out in the middle of the night to bury their cat underneath a beautiful oak tree they pass on their daily commute. Even my gerbil burials, and the funeral I held for my cat were private affairs, in the backyard with my family—our secret, quiet grief shared together.
Packman believes this social acceptability of grieving for pets is changing, noting that she’s seen a rise in memorials for pets and pet cemeteries. But in the meantime, says Bussolari, we grieve our pets so deeply because we feel like we’re not supposed to. “We worry a lot about making people uncomfortable, because then they don’t want to be around us—and if they don’t want to be around us then we’re by ourselves,” she says. “But the reality is that the more we talk about grief, the more we normalize grief.”
Lorena Bradford (left), head of accessible programs at the National Gallery of Art in Washington, D.C., leads a session of the museum’s Just Us program. The program gives adults with memory loss and their caregivers a chance to explore and discuss works of art in a small-group setting.
By Mindy Fetterman
[F]or today, there are no doctor’s visits. No long afternoons with nothing to do. No struggles over bathing.
At the National Gallery of Art in Washington, D.C., a group of older adults — some in wheelchairs, some with Alzheimer’s — sit with their caregivers in a semicircle around a haunting portrait of a woman in white.
“Take a deep breath,” says Lorena Bradford, head of accessible programs at the National Gallery. She’s standing before “The Repentant Magdalen” by Georges de La Tour.
“Now, let your eyes wander all over the painting,” Bradford says. “Take it all in. What do you think is going on?”
“I think she looks sad,” says Marie Fanning, of Alexandria, Va., who has Alzheimer’s.
“Yes. Yes, she looks sad,” Bradford agrees.
“This is such a gift,” Bill Fanning, Marie’s 77-year-old husband and caregiver, says of the outing.
Across the country, community groups, hospitals, government agencies and nonprofits are starting to do more to support at least some of the estimated 42 million friends and family members who are the primary caregivers of adults and children who have disabilities, are recovering from surgeries and illnesses or are coping with Alzheimer’s and other chronic diseases.
The National Gallery’s program is part of the trend focusing on the health, well-being and education of these caregivers, who are usually unpaid.
“We know that involvement with art improves well-being,” says Carolyn Halpin-Healy, executive director of the Arts & Minds program for caregivers and patients at the Metropolitan Museum of Art in New York.
“In our own research for persons with dementia, we see a reduction in apathy,” Halpin-Healy says. “For caregivers, we see less isolation and a reduction in stress.”
She co-founded the program with a Columbia University neurologist, Dr. James Noble, in 2010 at the Harlem Studio Museum in New York. The Just Us program in Washington is a spinoff of that program. Other museums in New York and Dubuque, Iowa, have similar programs.
Research on other museum-based programs like the National Gallery’s Just Us has found that analyzing and discussing art in small groups reduces apathy among people with Alzheimer’s, and reduces stress and isolation among their caregivers.
A bipartisan law signed by President Donald Trump in January calls for a national strategy to address the needs of caregivers, who are primarily women and provide 37 billion hours in unpaid care to relatives or close friends.
All those hours are valued at $470 billion, according to an AARP study. The law will require the Department of Health and Human Services to set up an advisory council and develop a blueprint for government action on financial and workplace issues, respite care and other caregiver issues.
At the same time, 42 states and the District of Columbia have passed their own laws requiring hospitals and other nursing facilities to provide training for caregivers who perform medical tasks, and to record them as the “caregiver” when patients are admitted or released from hospitals or nursing facilities.
The laws’ required designation benefits patients and their families, proponents say. In states without such a law Alabama, Florida, Georgia, Idaho, South Carolina, South Dakota, Vermont and Wisconsin (Kansas’ law takes effect in July) — patients can be dismissed from the hospital without family members being told or briefed fully on what care the patient needs.
The CARE Act is “more than just a law,” says Elaine Ryan, AARP vice president of state advocacy and strategy. “It’s a change in the practice of health care.”
Helping the helpers
Family caregivers are almost two times more likely to have emotional and physical problems than other U.S. adults, and three times more likely to have productivity problems at work, according to a 2015 study. The more intense the care, the greater the effects, the researchers found.
Dr. Eric Coleman, a gerontologist and recipient of a MacArthur Foundation fellowship in 2012, created the Care Transitions Intervention model. The national program, based at the University of Colorado in Denver, trains coaches to help caregivers ease the transition of a patient to home care. The coaches are usually social workers, nurses or others hired by hospitals and other facilities to work directly with caregivers.
Coaches talk to the caregiver before patients are discharged from a hospital. Then they have a one-hour coaching session at the patient’s home, and three follow-up phone calls. Studies have shown that having transition coaches can drop readmission to hospitals by 20 to 50 percent, says Coleman.
Even if a caregiver is with the patient when doctors give instructions in the hospital or clinic, the medical jargon can go right over their heads, Coleman says. “We tell people that for the next 24 to 48 hours, here are key things you need to do. Then we follow up at home,” he says.
Caregivers do more than make meals; they also perform medical tasks, like giving medicine, taking blood pressure, changing bandages and more. Yet they receive virtually no training, Coleman says.
“I’m a physician, and when I take care of my mom, I have an endless loop in my head,” of the to-do list, he says.
A 2015 study by AARP found that 46 percent of family caregivers perform medical/nursing tasks, 78 percent of family caregivers manage medications, and 53 percent of family caregivers serve as care coordinators. The majority told researchers they’d received no training in those tasks.
Caregivers are “the backbone of our health system,” says Alan Stevens, a gerontologist and psychologist who trains caregivers, in partnership with Baylor Scott White, the largest nonprofit hospital company in Texas, and a group of agencies that deal with elderly issues across the state.
“If caregivers go away, we have a problem,” Stevens says. “It’s important to better understand their needs — and to help them.”
Linking hospitals with caregivers
Dignity Health Systems, a large nonprofit hospital company in California, is partnering with the nonprofit Santa Barbara Foundation to provide caregiver coaches. At any given time, 1,000 caregivers are being coached, says Kathleen Sullivan, vice president of acute care services for Dignity.
Caregivers are now officially identified as a partner Dignity’s health team, Sullivan says. “They’re given a badge, they have a tote bag with information, and the hospital knows who to contact.”
Her group works with nonprofit aging agencies to provide in-home coaches, she says. “When people get home from the hospital, they’re just exhausted. They don’t remember what they were told in the hospital.”
In Virginia, the Bay Area Council on Aging and a consortium of four other groups and five hospitals are training caregiver coaches using the CTI program. The key to successful coaching of caregivers is to take training into the home, says Kathy Vesley, of the Bay Area Council on Aging in Fredericksburg, Va.
“Some of these folks are very ill, and they’re managing 12-plus medications,” Vesley says. “You get into the home and they say, ‘Here’s my shopping bag of medicines.’ And it’s literally a shopping bag.”
The consortium has seen 26,000 patients and caregivers over the past 2½ years. In that time, rates of readmission to the hospital have fallen from 23.4 percent to 9 percent, she says.
Coaches help with food, medicine and video training for how to do medical procedures, and help solve issues like how to get patients to appointments with doctors.
Out in rural southeastern Virginia, transportation takes a whole new meaning when your driveway is half a mile long,” Vesley says.
Having fun helps, too
Caregivers also need a little fun and relaxation, says Jason Resendez, executive director of the Latinos Against Alzheimer’s Coalition. About 8 million Latinos are caregivers for their family members, Resendez says, and nearly 2 million are caring for family members with Alzheimer’s.
To bring some of those caregivers together for fun, Latino groups in Los Angeles recently partnered in producing a comedic play, performed in Spanish, about a son who is taking care of his mother. Meanwhile, in Chicago, the Latino Alzheimer’s and Memory Disorders Alliance holds caregiver trainings and free dance classes — where caregivers can learn to dance salsa.
“It’s not just about translation,” Resendez says. “It’s not just about handing out pamphlets.”
